Tuesday, December 7, 2010

Oops. I was so excited about reporting back about Faithless, that I forgot to post about the result of my mammogram. Only 7 weeks after I had it, and I finally got to see Mr Ghosh, the consultant surgeon. As I thought, no news was good news and there was nothing of concern on the x-ray, and he did a hands-on examination and there was nothing wrong there either.

We had a brief catch up about my treatement so far, and how far along the herceptin I was, and he wants to see me again in 6 months time. That concerned me slightly, so I asked why so soon, and the response was that due to Dr Iqbal leaving, they didn't want me to fall through the gaps. I think I will see another oncologist for future heart scan results, but it does feel better to know that Mr Ghosh, who has been with me from the start, will continue to take a close interest. As I was waiting outside his room, the husband of the patient before me was chatting about how brilliant Mr Ghosh was. I think most (if not all) of his patients feel like that. Reassuring.

I also took the opportunity to ask about reconstruction. He said to give them a call when the herceptin was all done, and they would arrange for me to see a plastic surgeon. Mr Ghosh doesn't do that bit, he leaves it to the experts. However, he did say that they prefer to be able to do a reconstruction using tummy fat now, and potentially no muscle. This would be great. The current (old?) way was to take muscle from the back or the tummy to hold in an implant, and this obviously is a big operation and can cause problems in the donor site (e.g.weak tummy muscles). An implant also isn't always what you want. Having a foreign body in you after what you've been through isn't the most reassuring. So they are starting to use tummy/thigh fat instead. Its less likely to be rejected, although it can be reabsorbed into your body, and you get a tiny bit of lipsuction at the same time! Result! A friend who recently had this done was black and blue afterwards, but still able to come along to a party in the week after the fat suction!

Herceptin No 10 tomorrow. Bupa nurses have confirmed by phone, and we are again hopefully of a pre-9am start. We shall see.

Oh, and we're moving house on the 20th Dec. And I'm changing jobs (just location & role, not employer) and finish in my current post on 17th Dec. Don't talk to me about Christmas. So I still feel like I have a lot going on at the moment and am a bit tearful. Happy, busy, all positive - just a bit exhausted.

Sunday, December 5, 2010

The week that has just gone, shall henceforth be dubbed "Faithless week".

Yes, indeedy, we managed to see Faithless live not just once, courtesy of a lovely lady (B, you know who you are, thank you!!!) who works for the Manchester Evening News Arena, but actually twice. A friend was able to get tickets for the Cardiff gig on Wednesday, so we went there first.

We arrived slightly late on Wednesday, due to having been at work and then needing to get food - and not realising what time the main act would come on - so we missed the support (Example), but arrived just as Maxi Jazz and co were on their opening number. 2 hours later, a few beers and lots of dancing, and we walked back to the bargain Travelodge which was our abode for the night. If any of you follow me on Facebook, you'll see from the numerous posts I put that I enjoyed the night!!! Greg wasn't all that impressed at walking back to the hotel... it was only just over a mile, but bitterly cold. J and I kept thinking our hotel was around the next corner, so turned down the taxi that Greg managed to hail! Oops.

So yesterday (saturday) was the Manchester event, and we decided to arrive early so that we could get some of the Christmas shopping done beforehand. Mistake. Big mistake. Huge. (well, it wasn't that bad, but it sounded good!)

We found the Travelodge (so we thought) but couldn't check in because we were too early. Or, that should be we COULD check in, but it would cost £10 more. What a rip off. If the room is ready, its ready. If it isn't, it isn't. Obviously some rooms are ready, so they think they can charge extra! We declined and went straight into the city centre instead. Found all day/evening parkng for £6 right opposite the venue and walking distance from the city, so was very happy with that. It was raining slightly and we both have colds, but we could cope with hat. What we couldn't cope with was (a) MASSES of people everywhere - we hadn't really een thinking about this being a saturday before Christmas, on a week when many people had been housebound due to the weather; and (b) THE SHOPS ARE ALL THE SAME AS ANYWHERE ELSE!!! So uninspiring. Even Selfridges didn't offer anything suitable for my friends or family. So we bought exactly nought. Well, a drink in a pub , a hot chocolate in Starbucks and a meal in Tampopo was as far as our spending went.

On to the gig, and we arrived in plenty of time to see both support acts. "Union" were a DJ set who seemed to think holding your deck and laptop behind your head while you pressed buttons was the equivalent of holding your guitar behind you back. Errr, no.

Example is more well known, and I was reasonably open-minded. If you like his music, you'd have love his set. The sound quality on the first song was a bit rubbish - I always theorise that the sound is set up for the main act, so the support always has a rum deal. But it seemed to get better, so maybe they adjusted some settings. But apart from "Kickstarts", we just aren't all that taken with his music. One of the songs just seems to repeat the line "We came, we saw, we killed the crowd" over and over again. Rubbish.

The Faithless set was totally amazing, as we knew already. This time we were 100% sober and in a seated area, which isn't ideal if you want to dance, but we managed! And we were very grateful for being pretty near the front too. The chap to Greg's left was a a little lairy, but in a happy, chatty way, not threatening. Greg reckons he and his mate has a certain type of 'bracelet' on that required them to be home by 10pm... and they did disappear early (but I thought it was because he pulled!).

The girl to my right was fine - except that she kept going "Whoop, whoop" right in my ear and was singing the wrong words/at the wrong moment all through!

The set balances old songs and new, and some serious upbeat tracks with some of the slower instrumentals, to give both us and Maxi Jazz a bit of a break. He talked to the crowd a lot more than in Cardiff, but it was a much bigger crowd and this one was being recorded and sold after the event. Amazing stuff. You don't need to have beer to enjoy this stuff. Faithless never put a foot wrong.

This one summarises it all for me (and please note, I would like it as my funeral song!!)

Thursday, November 18, 2010

I feel like I am always making excuses about why I haven't done x or y at the moment. I'm sure people must be getting fed up with me. But it does feel as if life has been a little non-stop for the past 6 months+, mostly all my own fault, I think!

As well as a few months where many workday evenings and weekends were spent doign DIY at Greg's house, I have also done a couple of small tidy up DIY jobs at my house (i.e. paint the kitchen ceiling, only 2 years after the wall between the kitchen and dining room was removed!!, and fill and paint the holes in the wall where a curtain rail used to be). So the working day often hasn't finished until 8pm or later due to that, and food has been take aways or 'quick' meals rather than relaxed and nutritious.

I was also determined to implement more teaching at work. It was something I had wanted to do last year, but treatment meant it would be foolish and unfair on the rest of my team to implement it. This year, I have been present and so could do my share, so we did it. I also needed to have reasonably high teaching hours, as I am doing a course called the "Mini Academic Development Programme" which supports academic (teaching) staff to become better teachers. The 2 modules of the course could count towards a PGCE (post-graduate certificate in education), if I wanted to continue it on. I need to log 45 hours of teaching.... I haven't counted them up yet, but don't think I'm quite there yet...

At work we are also one member of staff down compared to last year, and although no-one is dropping any balls - everything is getting done, customers are getting served - we have had to reduce the opening hours of the library and the remaining team are much more customer facing than ever before, which can be exhausting. Saying the same things to students (be quiet, turn your phone off, take that drink/food/attitude outside etc) day in, day out is very tiring.

We're also preparing for me to leave the team in January. I'm trying to get some things done before I go so that I can leave everyone as prepared as possible, and they are fretting about what is going to happen when I have gone. It's not going to be ideal: I won't be replaced by a new manager, as it is probable that the whole team will be transferred to the College's management at the end of July 2011, so there is little chance of getting someone in at the right level to manage the team for just 7 months. Instead, my current boss will look after the team and I'll keep a hand in to support her as much as I can. We'll get someone else in to take on the day to day subject support work that I do, and to relieve some of the remaining team so that they can concentrate on any work that needs doing in preparation for the transfer.

It's not ideal. I am still torn about leaving. I will miss everyone so very much, and will probably always feel guilty for leaving them - but I was given an opportunity to stay with my current employers and it was (and is) the right decision for me to take it. The team I am going to are also great, and will be a pleasure to work with - and I suspect it won't be quite as stressful a job.... but only time will tell!!

Oh, and buying a house while selling two others. That's why I feel a little busy at the moment. If I don't return your call or email instantly, it's not personal. xxx

Wednesday, November 17, 2010

Well, we have been working very hard to get Greg's house ready for sale, and now it is (all bar putting in some carpet, which will be done this weekend). Mine is now up for sale too.

We have located a house to buy already.... and in fact, have made an offer and had it accepted. With the amazingly kind support of my parents, we are able to purchase a house before we have actually sold our existing homes.

The new house is a little bigger than my current house, but is based on the side of a hill with fantastic views (and a deck from which to admire them), no overlooking neighbours - in fact, only a handful of houses on the no-through road, all to one side of our new property, wood burner, Rayburn, and much to Greg's delight, an enormous workshop AND a garage! It is a 100 year old cottage that has been beautifully extended and renovated. After all of the DIY that we have done at Greg's house, not having to do anything at the new place is such a huge relief!

The only downside is that it is a little further away from Bristol than Monmouth is, so my commute from January is going to be a little longer. Even from Monmouth today, it took me 1hr 20 minutes to get to the University's Glenside campus. 50 minutes of this time is sitting in traffic on the M4 and the ring road. I will be getting the train from Gloucester some of the time, methinks....

We could be moved in by Christmas, if all goes to plan. Watch this space!

I had my first "Herceptin at home" experience yesterday. After being told that this would happen, I hadn't actually been contacted by anyone to find out what was going on. Coincidentally, while I was playing telephone tag with the contact at Velindre hospital, the Bupa coordinator left a message on my phone about it. She had apparently been phoning me regularly but not getting an answer (indeed: I work, and am not waiting by my mobile phone 24 hours a day) - and not leaving a message!!! Funnily enough, I had no idea that it was her or I would have called her back. Apparently, she doesn't like to leave a message because of patient confidentiality. She could have said something like "This is Cathy from Bupa, please call me back on xxxx" couldn't she? Sigh.

Anyway, it was all arranged, and I received two calls from a more local coordinator and the actual nurse on Monday evening (they were brave enough to leave messages, thank goodness!) to confirm it was all set. The drugs will be arriving at 8am, and the nurse will arrive at 8.30am to get cracking. Great.

You can probably tell from my tone that it didn't go quite to plan! Sonia the nurse did indeed arrive on time, but the drugs did not. In fact they didn't arrive until gone 11am, so it was past 1pm before it was all done. Sonia was not happy - she had not been informed there was a delay, and the delay to my treatment also caused a delay to her next appointment and a couple of wasted hours. I had to call into work, as I was now not going to be able to go in and cover my sessions on the Enquiry Desk. Luckily they were able to arrange cover, and I worked before and after the treatment from home. Sonia was able to do paperwork while we waited, as well as make numerous calls to people to see what had gone wrong with the delivery. We never did quite get to the bottom of it, but she said she would put in a formal complaint.

Apart from that, having the treatment at home was absolutely fine. She had forgotten to bring her drip stand so we improvised with a coat hanger over the kitchen door, and didn't bother with the pump. Apparently, it was unusual to adminster it in kitchen/diner as most people do it in front of the telly - but I wanted to do some work as it was done, so the kitchen was better for that!!

Sonia was really lovely and easy to talk to, and she has arranged for my next treatment to be on a Wednesday, which is much better from a work point of view. Let's just hope the drugs arrive on time next time!!!

Apologies again for having neglected my blog. I am sure everyone will have stopped checking for updates now!!!

Anyway, I was supposed to have seen the surgeon, Mr Ghosh, on 5th November but received a letter cancelling that appointment. I had to call to make another. And the next date they can do? 3rd December! This is rubbish - I don't get the results of my mammogram until then, thats a full SEVEN weeks of waiting!! I know that I should call and see if I can get the results over the phone, but I admit that I am burying my head in the sand a little and working on the assumption that if there was anything to worry about, they would not leave it for 7 weeks before telling me. I'm pretty sure they would call me back sooner if there was anything to worry about.... wouldn't they?

Thursday, October 14, 2010

Today was my first annual mammogram. I won't lie to you, it is a touch uncomfortable. Having your boob sandwiched between two blocks of perspex as tightly as possible, while you hug the machine and have your face pressed against the cold metal, while they hand tighten the screws to get it that little bit closer, isn't the most pleasant way to spend an afternoon, but in reality it only lasts seconds. And yes, you do want them to get it right and get as much flesh in there as they can, so you get the most thorough check possible.

I walked into the hospital with my usual confident stride, read some exciting papers about the Browne Review while I waited to be called, and was happily chatting to to radiography nurse as I undressed and got into position. It was only as I was leaving and she commented that "the first one is always the worst" that I realised that it was and shed a couple of tears. I could put the possibility that the scan might discover more cancer to the back of my mind before. Now that they have taken the image, I can't quite so much. It's quite scary. I don't get to see Mr Ghosh for the results until 5th November so I asked whether if they found something, would they call me back sooner? I can't imagine them leaving it more than 2 weeks, butI may phone next week to ask if there are any preliminary results...

In other news, last week I had my 7th Herceptin treatment. As before, it was a loading dose given at Velindre, and I had no reaction to it, so just spent the day reading (work stuff) and relaxing. Next one on the 26th October, and then the rest from home. I have yet to be contacted by Bupa to see how that all works, but am still living in hope that I can have the rest in the evening at home.

This last couple of weeks have been very hectic. We are still working on getting Greg's house ready for sale. It shouldn't take much more now. Some grouting, bathroom washbasin, wallpaper and painting to do, plus a few smaller bits and bobs, but the bulk of the work is done now.

This week, ma and pa visited on their way to Devon (Monday), then we went to a Groove Armada gig in Bristol (Tuesday), then worked late (Wednesday) and today was boob-squashing day. I've also had my house valued today: not worth quite as much as I'd like, but its not too far off my estimates. Will get some small things done like painting the kitchen ceiling (it is still has raw plaster where we had the wall taken down!) and then get it on the market, so that we are ready to buy somewhere new... Exciting!

Tuesday, September 21, 2010

Today, 21st September 2010, is the first anniversary of my mastectomy. Some might expect me to be sad about that, but I am not. What's done is done, and I can live with it quite easily. No psychological damage, my fella still fancies me, I've adapted my clothes to fit. Doesn't mean to say I won't have a reconstruction when I can, but it isn't causing me any day to day issues.

If anything, I want to celebrate that I have made it to the first anniversary and I feel absolutely great. I have withstood the treatment reasonably well, my hair is coming back thick and fast (literally) and so far (keeping everything crossed here) the cancer has been beaten.

I have an appointment for my now annual mammogram check on 5th October, followed by a meeting with the surgeon (to discuss results, I guess) on 4th November. Not brilliant that those dates are a month apart, but I am confident that if there is anything worrying to see on the scan that I would get to see him a bit sooner!

The other reason to celebrate today, is that I saw Dr Iqbal for the results of my latest heart scan, which I had yesterday. Initially, the result was not available on the screen when he looked for it. They had promised me that an appointment the day before the clinic would be OK, but obviously they hadn't quite got around to updating the system yet... My appointment with Dr Iqbal was at 5pm, so he rang and rang (then got his registrar to ring) and there was no answer to be able to get the "unvalidated" result. Then, Magical Michelle rang - and of course, someone answered, and they gave the result. I now have an ejection fraction of 53%! Yay! So this means Herceptin treatment can recommence.

I had 6 treatments out of 18 before it got stopped, so now have another 12 to have. The bad news is that I have to have two loading doses again, which mean a day at Velindre Hospital each time to check there is no allergic reaction. The good, nay, BRILLIANT news is that they are now able to offer the remaining treatments from home! Yes, indeed. Bupa have been subcontracted to deliver treatment from your own home. So I guess they will rock up with a drip, the medication and a nurse and hook you up in your living room! Apparently, this is saving the hospital a lot of space and time, as there is less of a crush in the waiting and treatment rooms. For me, what I am hoping it means - and Greg shakes his head in despair at me - is that I can get a more convenient appointment time and still do a full day at work on treatment days. Seeing as it doesn't cause any ill side effects (apart from giving you a dodgy heart, for which I had no symptoms), I don't see this as a problem.

12 more treatments at 3 weekly intervals will take me another 9 months. So if they start in October, they'll be finished in June 2011. So, still a long way to go.

The other sad news, is that Dr Iqbal is definitely leaving, so this may have been the last time that I will see him. I thanked him for everything he has done for me. I also quizzed him on what his plan for us trying again for a baby would have been. The detail of the plan is this:
- 9 more months of herceptin (until June 2011)
- then 6 more months on zoladex (December 2011)
- then come off the zoladex and wait for my periods to come back (sometime early 2012)
- then come off tamoxifen and try and get preggers (2012...)

Lets hope we get that far without any more hiccups. I'll be 39 by then.... eek!!

But I am happy.

p.s. Photo courtesy of Jenny Grodzicka - sorry, I should have asked permission before I stole it! xx

You may recall that my Herceptin treatment has been suspended because my MUGA heart scan result was not what it should be. Well, I have been on the perindopril tablets since then and my blood pressure is down - the last reading I had, it was at 115/79 which is nice and normal. However, I had another scan and my % (of blood being pumped through the left ventricle) is not quite back where it needs to be. Normal is 50-70%, my first 'bad' reading was 44% and my latest reading is 48%. So its going in the right direction, but it isn't quite there yet.

Dr Iqbal mentioned that I ought to increase my perindopril dose between now and the next heart scan, but although I saw my GP on the same day, Dr Iqbal hadn't given specific instructions to we decided to wait until the GP recieved a letter. This arrived today, so they have phoned and told me to double my dose up to 8mg a day, and if I suffer any low blood pressure symptoms (dizziness, excessive tiredness), to toddle in and have a BP check. So tomorrow, we start on the higher dose....

The next heart scan is in the middle of September, followed by another appointment with Dr Iqbal. It will be my last one with him, however, as he is apparently leaving. I didn't get the chance to ask where he was going, but I will miss him. He has been a champion for my fertility issues, so I will make sure I will ask him what his longer term plan would have been for me, so that I can make sure it happens. I will miss him and his funny ways!!

Most remiss of me, not to update on here about the fantastic walk that my friends and I did on 3rd July.

"Team Flora" consisted of me, Greg, Hannah, Charlotte, Gail and Yvonne - and don't we all just look fine in our bras?

We had great fun decorating them - quite a few of us (me included) specially designed them to cover our wobbly tummies!

We walked 13 miles across Bristol - from Ashton Court to the harbour and back again, via busy Park Street and White Ladies Road, and escorted by policemen who helped us cross roads safely and a volunteer attendant at every mile. Every single one of them - without fail - gave Greg a compliment as we marched past with his windmills spinning gaily!

Greg decided that he wanted to march on at speed, so we lost the other 4 quite quickly (sorry girls) and trudged on apace. We made a strategic decision not to stop at the first loo block, wisely deciding that those that were stopping would give us a bit of extra space if we pressed onwards, which it did. We had a comfort break at the next marker, mile 7, and grabbed more water to keep us hydrated in the warm sun. At mile 10, Greg felt his thighs go numb, and the last couple of miles were fairly steeply downhill which came as a shock to our legs as it felt as though the rest of the course had all been uphill! Greg was a broken man at the end, but was pleased that we had made it in under 4 hours (3hours 45mins to be precise), and was back to normal after a couple of days rest!

I was most impressed that everyone kept starting sentences with "when we do this next year..." - so anyone else want to join us?

Added up, we managed to raise over £1500 for Walk the Walk, an outstanding achievement. Thank you so much to my amazing friends, and to everyone who donated. We couldn't have done it without you.

Yes, you guessed it - I got the results of the genetic testing that I had done in March (see March 17th blog) and I have none of the so-far discovered gene mutations known to cause breast cancer. So I was just unlucky, I guess.

Or I have a gene mutation that hasn't yet been discovered. Mum and I have both given our blood samples to another clinical trial which is continuing to scour the human genome for any other faulty genes, so there is always a possibility there is something there.

For now, though, what this means is that I will not be proffering my left boob to go under the knife, and I won't be worrying overly about ovarian cancer or opting for an oophorectomy (I love that word!!!). My neices (and nephew) don't have to be any more worried than anyone else when they get older. Phew.

Saturday, June 19, 2010

Hurrah! GP check yesterday, and my blood pressure is down again! It is now 124/86 which is much more normal for me. Normally, they increase the dose of Perindopril from the 2mg a day that I am on at the moment, to 16mg for it to do what it needs to do. But doc has left me on 2mg until next Friday's check as he doesn't want my BP to go too low - it's almost as bad as it being too high as I'd feel tired all the time.

Was a bit annoyed at the surgery as I had an 8.30am appointment and expected to be straight in and out and then Greg and I could get to work. Even going at that time would make us late at work. However, some bossy mother had brought her teenage daughter in and wheedled the receptionist to allow her to have "a quick chat" with the doctor ahead of the drop in clinic starting. This quick chat turned into the doctor doing a procedure on the daughter (don't ask me what!!) and using the nurses treatment room, which I was supposed to be in for my appointment! So the whole thing to 30 minutes longer than it should have done and G and I were both really later for work. Grrrr. Its not as if I haven't already missed enough of work in the last 9 months, is it? I know, I know, I have the best excuse possible, but that doesn't mean I don't feel guilty about not pulling my weight at work.

Monday, June 14, 2010

On Friday, I came home to find I had been scheduled with an appointment for Dr Iqbal today, down at Velindre. So off I toddled, not really knowing what it was for but hoping it was to help answer the questions about what exercise I could do following the heart scan result. I had called Michelle - who, bless her, knew everything about my latest results even though I haven't seen her for ages - on Thursday to ask whether I could walk or run and continue with some kind of exercise.

I have been put on Perindopril, an ACE inhibitor under the supervision of the GP. He explained what it was all about: the Herceptin seems to cause the heart to swell, which reduces the amount of space inside it for blood, which is why the % rate is lowered and your blood pressure is higher. The body reacts by trying to make the heart bigger, which just exacerbates the problem, so the drug should reduce the swelling and allow it to go back to normal. My BP today was 141/91 (my worst result EVER!), and I will go back on Friday for a further check, and again the following Friday. They up the dosage each time, if the result is right (although I'm not sure what the right result will be!).

Dr Iqbal will be booking me another MUGA heart scan at the end of July, and an appointment with him on 27th July to see if I can go back on the herceptin. Fingers crossed!

He will also write to Mr Ghosh, the surgeon, to discuss my follow up and mammogram, which will be due in September.

I like Dr Iqbal - I feel he champions my cause, but you do have to make sure you tie him down to get answers as he darts around doing various things all the time! He went off to phone my GP in the middle of my consultation, getting the new prescription sorted out! But at least you know stuff gets done, and the GP was all sorted with my prescription by the time I had driven from Cardiff to Monmouth, which was great.

I missed a half day at work, but at least I got it sorted!

You'll be thrilled to know that I am allowed to Walk my Walk on 4th July (don't forget to donate, if you've been meaning to but haven't got around to it!) and to swim, but just not allowed to run fast - which I am incapable of anyway! Basically, take it steady and don't overdo things.

I will also not be drinking for the next month or so (well, maybe the odd ONE drink of an evening), which Greg is thrilled about as I can be the designated driver on England footy game nights! We went out last Saturday, and Luke narrowly avoided causing a fight - luckily a scrap over on the other side of the pub was a good distraction! Table service (supposed to be provided along with our table booking, burger and beer) wasn't forthcoming, so Greg managed to negotiate two free rounds of drinks! At least we got something from the night, even if the England team only managed to salvage one point... Lets see what Friday brings!

Tuesday, June 8, 2010

I chat on some online forums with other breast cancer patients and find it helpful to get reassurance, information, feel like you're not the only one going through this stuff (which sadly, we are very much not).

I get a few private messages every now and then from some lovely ladies who tell me that they appreciate my outlook, attitude and find me an 'inspiration'.

Now, don't get me wrong, I am really pleased that they find what I write supportive and helpful. I hope, if nothing else, to show that all is not doom and gloom after that initial scary diagnosis, that the journey is a road that can be travelled without the worst happening to you, that some semblance of normality can continue throughout and afterwards (am I at the afterwards yet? More or less, I suppose!).

But I really don't want to feel responsible for anyone elses emotional journey. I'm having a down day, and I don't want to feel inhibited about expressing that. I know that I will bounce back pretty quick, but I have to be 'allowed' my down days and not feel that I have to keep up a cheerful front for anyone else's sake. And I don't. I won't.

To anyone reading this going through the same/similar, all I can advise is go with it. Feel what you feel. Allow yourself. Don't expect the worst or the best, but don't imagine the worst either. Flow.

I cried on the doctor and the nurse today. I phoned Greg and cried down the phone at him. I sulked on the phone to my parents this evening. But tomorrow I will gather myself up, be grateful that things are not a lot worse, and get on with life. What else is there to do?

As reported yesterday, today I had an appointment with the oncologist. Dr Iqbal is at a conference in America so I saw another lady, very nice, but not one I have seen before. I also did not know the breast cancer nurse who was in attendance, which is a shame as Michelle - the regular nurse - is so lovely and I feel so much more of a connection with her. Today's appointment was apparently to follow up on Herceptin treatment and to consider the results of last week's MUGA heart scan.

And the results? Not good. :-(

February's result was 59% (blood being ejected through the left ventricle with each heart beat), and this time it was 44% - and therefore they have suspended my Herceptin treatment for the moment. She said that I would be referred on to a cardiologist just to be on the safe side, as my blood pressure is also higher than usual. I mentioned that last week it was 133/56, and today it was 135/90. I am normally consistent at 120/70 or thereabouts.

I will probably be recalled for a further heart scan in 2-3 months time and they'll then see whether I can be put back onto the Herceptin.

I have to admit, I fell slightly to pieces at this news. Possibly the thought that I was having every treatment possible is one of the things that has been keeping me going. That one of my 'just in case' treatments will be withdrawn/curtailed, I feel like an insurance policy has been invalidated. I want everything they have got to be thrown at this cancer.

I have been reassured that the Tamoxifen will do its job (reducing the risk of recurrence) and that Herceptin is just an 'extra' and not entirely proven, but if that were the case, why would they even bother with it? I'm not stupid... However, I am taking heart in the knowledge that there is a current trial looking at whether 6 months of Herceptin is enough, and that a full year doesn't actually give any significant benefit. These trials take years to run and apparently they are finding it hard to recruit to this one (who is truly willing to take the chance on fewer treatments if the trial shows it isn't enough?). Lets hope it shows that it is enough. I may yet get put back on it, if, after 2-3 months a further scan shows that my heart has recovered.

I know this is quite common, but I just feel so disappointed.

I am hoping that me having started running again won't have contributed - surely me getting fitter should help my heart, not push it too far? Mum and Dad (hello!) want me to cancel walking the 13 mile walk. I will talk to my GP tomorrow about it, and will ask the cardiologist when I get the referral through, but I honestly feel absolutely fine and don't think that my heart is seriously damaged - just slightly more compromised than normal. If I had only 6% higher reading, I would be within the 'normal' range.

The only benefit I can see at the moment is that the appointments won't get in the way of work and other commitments! Hhmmmmm.

Monday, June 7, 2010

Don't worry, I'm not depressed. But according to one work colleague she is amazed that I am not, and seems to be waiting for it to hit me! I won't say who it is that has said to me "But aren't you depressed?" because she really does mean well and is a lovely person, but lets just say in her job, she ought to know better than to say things like that! No. I'm not depressed. I am thrilled to be alive and well.

I am so alive and well that I have started running again. I am on 'lesson 4' of the Running Trainer 5k program that I'm following on my iPhone - totally started from scratch, and I very much need to. It's a 'run one minute, walk one minute, run 2 minutes, walk 2 minutes etc' program, and it is hard going, which shows that I have gone back to zero fitness through all of this. But I will get it back again, and at the moment I am enjoying trying!

She also said to me that I must talk to X, another person at work who has recently had a lot of time off due to cancer treatment but is now back at work (who, like me, is looking so well and so tanned! [said as if we shouldn't be allowed in the sun, should be locked inside hiding under a duvet watching daytime TV!]). I was aware of this person, but I don't know her, so we should get to together to talk about cancer? Hmm, fun. Sorry, but if I get together with her it will be to talk about books, journals, how I can support her teaching. She has probably been made to feel like a malingerer because she tooks some months off, whereas I didn't. I have been fortunate (although, as Richard Hammond said on the programme about head injury with Stirling Moss, on BBC Four last night, exactly how 'lucky' is it to get thrown from a car at 200mph and land on your head?) not to have been terribly unwell throughout the treatment, but I know it makes some people very sick indeed and they are not malingering!

Everyone also says to me, that surely my positive attitude has something to do with it? I am not convinced it really does. Every time I have started a new treatment, I have sat back to wait for the side effects to hit. And they haven't, or at least, not that hard. But I was expecting them, I wasn't ignoring them. I wasn't being brave or pretending to be well. I have gone with whatever my body feels.

Take last saturday, for instance. We went over to Greg's house (yes, he still hasn't called a plumber to arrange to get central heating fitted, I know, I know) to tidy up the garden and my back got sore from bending too much whilst weeding. I didn't feel very hungry, my back hurt, I fell asleep in the car on the way home. I went to bed for over an hour when I got home. I don't often nap in the afternoon, but I really properly slept. I didn't feel so well on Sunday and didn't eat much again - I think I must have been fighting off the stomach bug that hit Greg a week ago. So, I didn't feel well and I stopped doing anything, I rested. And I am better now. See, I do listen to my body, and it looks after me.

The good thing is, I have lost a couple more lbs, so I am heading back to my pre-chemo weight! Yay!!!

That's my rant for the day over with. Tomorrow, I have an appointment with Dr Iqbal.I am expecting to find out about my follow-up regime, and want to ask about timescales for reconstruction ops. I am doing stomach crunches in case the TRAM flap is a sensible option for me - you need decent stomach muscles but get a tummy tuck as well as a new boob! Not entirely sure about the pros and cons of the various types of operation they do yet, but would like to have choices!

Friday, June 4, 2010

Yes, go on, admit it. You thought I was all done and dusted, didn't you? Chemo is done. Radiotherapy is done. Yeah, Ok, so I'll be on Tamoxifen for at least 5 years but that doesn't count, does it?

Well, sadly, I am not all done just yet - but I am a third of the way through my Herceptin treatments. That means I have had 6 of the 18 treatments. I still have to go to hospital to have them. I have to have a cannula in my hand and sit there for half an hour while it drips through. (and the rest of the time waiting for the nurses to be ready for me and to remove the needle at the end). Every three weeks, until next February.

The good bit is that there aren't any immediate side effects, so I walk in, get it done, walk out and then forget about it again for another three weeks until I go "Oh! That time again!" and off we go.

It feels good to be a third of the way through, it feels like progress. The 6th was delivered last Wednesday.

Today, I had my 3rd MUGA heart scan. Just to remind you, these are to check that the Herceptin hasn't damaged the heart in any way. It checks to see how much blood is pumping through. This time, the needles didn't want to go into my elbow, so one went into my hand (you have two: tin and radioactive fluid). And then, under scan, the tin was all staying in my arm instead of heading to my heart to show up under in the picture! I had to hold it above my head to give it a bit of help! They also took my blood pressure this time - they don't normally - and it was 133/56 which seems a bit odd (as far as my very limited knowledge tells me, the first number is on the higher side, and the second on the lower side - so maybe that means I am normal?) To be honest, I think there probably was some 'white coat hypertension' going on as they took it just after messing about with needles, so I was probably a wee bit tense!

Results next week, when I see Dr Iqbal on Tuesday.

I keep getting asked whether I have had the "All Clear" yet. So will you allow me to educate you on that one? There is No. Such. Thing. I am learning this as I progress. There is only 'No Evidence of Disease', apparently. I will always live with the worry that it will come back - same place, other boob, somewhere else, and I have to hope that it doesn't. My cancer was gone immediately that I had surgery, so if you like I was 'all clear' from that moment onwards. The chemo and the radiotherapy and the tamoxifen are just there to mop up any stray microscopic cells that might go on to settle elsewhere and multiply. We hope that it has killed them all, and that the tamoxifen keeps any loose ones at bay.

One more positive news, I have now gone out in public a few times without any hat or wig. The wig got ditched about two weeks ago when I had a moment on a Monday morning where I was dreading having to put it on for work. So I didn't. I wore my hat instead. This week has been so hot, and my hair is thinly coming along, so I have gone bare. My grey hair looks very distinguished (I like to think)! I took some photos last week (click the photo to see the slideshow), but it has grown a little since then.

I've also got some more eyebrow and eyelash growth, and whilst camping last week, Verity (a former professional make-up artist) gave me a lesson in how to make up my eyes as I have hated them looking kinda 'blank'. It is definitely helping, and I am feeling a bit more like 'me' everyday.

We've had this week off work and have done: Westermill camping (Friday to Monday, including Greg being very sick on Sunday night/Monday) - ; visit to Exeter; Herceptin and sorting out camping gear; trip to St Davids; heart scan and visit to Cardiff city/Bay and house/car cleaning). Tomorrow, we are off to Greg's house to tidy it up a bit, and Sunday...? Sleep probably! Back to work on Monday...

Sunday, May 23, 2010

Just one more radiotherapy to go, and I don't know whether tiredness is going to kick in anytime soon, but I suspect not. Yesterday, I was up at 8am and went for a run (back to beginner training again), walked into town for a few bits and pieces, got stuff ready for camping and then woke Greg up!

We went down to Cockwood, near Dawlish Warren, just for one night with Luke and his girlfriend Charlotte and stayed at Cofton Country Holiday Park. It is really nice campsite, and was a walk away from one of Greg's favourite pubs, the Anchor Inn, which sells his favourite beer, Otter. We sampled a few pints and I had a nice baked camembert and a fish pie, before we headed back to the campsite and a short visit from Greg's mum.

This morning, I woke early again and made the tea, while Greg slept and Luke and Charlotte packed up their tent to head off to another social engagement. After a sausage sandwich brekkie, we soon followed, going via Greg's dad's to say hello, and then to Darts Farm to buy a couple of crates of bottled Otter to take camping next weekend at Westermill.

The sun has been baking hot all weekend, so I have had my hat on, factor 50 suncream on my upper half, and a scarf tied around my neck and draped over my shoulder so that my radiotherapy side does not get burnt. The radiotherapy will make it ultra sensitive to sunburn for the rest of my days now, but it will be particularly sensitive early on, so I have to be very careful with it.

I have found some 'secret support' vests from M&S which fit my 'comfy' boob (the one I was given after surgery, which is like a mini-pillow) as I find my regular prosthetic boob is too big now. It matched originally, but my real boob has deflated in recent months - as my oestrogen levels have dropped, I guess - and it looks odd now. The vest tops can be worn in the summer and I think, look quite nice. If you're looking, or if I bend down, you can tell that I have no boob, but it isn't obvious to most casual observers and I'm not ashamed. When I went running, I didn't wear any prosthetic at all, I was just lopsided!

This afternoon, it has been too hot to do anything much. Greg has had to go to work to make sure his network comes back on after a scheduled power outage, I have unpacked all our camping things and put a couple of loads of washing on, and caught up on some iPlayer and 4oD TV programmes.

My last radiotherapy is tomorrow morning - I have bought the nurses a cake from Darts Farm - and I have a 4 day week before 8 days off. This of course means the weather is going to break. We can't have it all, can we?!

We are called Team Flora as it is a moniker I use on some internet forums I chat on, friends from which have been amazingly supportive, and some of whom are walking other Sun and Moonwalks around the country. Honestly, the internet can be amazingly supportive and powerful sometimes. I am extremely grateful for all of their support.

I have now had 10 of my 15 radiotherapy treatments and all is going well. I have a square of 'tan' where my boob used to be, and my shoulder is slightly red, but at the moment it is not sore - just a little itchy occasionally. I'm feeling a little bit tired, but not significantly. It certainly isn't stopping me doing anything and Greg is helping with the long drive (45 mins to work in the morning, 1.5 hours from Gloucester to Cardiff in the afternoon, and 45 mins home again - occasionally with an extra trip to and from Bristol thrown in for good measure).

The nurses are really lovely and we have a chat and a joke each time I go, and I'm getting better at getting into position correctly without too much need for them to adjust me, now.

If you're interested in seeing how it all works, I have found the video below which shows you (click on the picture to play):

Otherwise life is ticking along nicely. My hair is slowly getting thicker - Greg tells me that every day it looks a little darker, although it seems a lot more grey than it was before! It still isn't thick enough to go wig or hatless, but it won't be too long before I do.

It feels like my eyebrows and eyelashes have thinned slightly more, and quite a few of my fingernails are trying to escape - 4 have lifted from the nail bed, but only the top half of the nail has separated, so they are all in place and it looks like they will just grow out. I am covering their slightly strange look with dark nail varnish! This is a side effect of the chemo, delayed due to the slow growth of the nails.

I also have some itchy patches on my arms and neck, so will mention that when I go to the GP's on Thursday. It might be a side effect of the Tamoxifen (or maybe the Herceptin), or it might be entirely unrelated! Who knows.

Nearly at the end of the major treatments now. Will find out what happens next when I see Dr Iqbal in June.

Tuesday, May 4, 2010

My first radiotherapy session went well today. The staff were very friendly, as always, and we had a chat about what was going to happen and tips about skin care before I was taken to the machine. I asked about what the planning session does, and the radiographer showed me an image from my CT scan. They use the scan to identify the edges of the breast tissue to make sure that the radiotherapy targets all of the former boob area, and also the neck area to get any remaining lymph nodes.

When they deliver it, you lay on the bed and the machine moves above your head and to your side. You have your arms above your head, but held in arm holders and they wiggle you into position to make sure that you are positioned absolutely correctly. I could see the lasers they use to line you up reflected in the metal of the radiation arm!

Apparently, I can expect to get a couple of 'sunburn' squares on my chest, and tiredness, but apparently most people don't get these until at least the third week.

Today took about 40 minutes in all, but tomorrow should be much quicker now that all the forms have been signed and information given. In, zap, out.

Oh, and the work conference? I'm not really sure I got the point of it....

Monday, May 3, 2010

It's nearly time for the radiotherapy to begin - tomorrow at 5pm. Eek. I am sure it will be a non-event, but I am also sure that I will be slightly anxious tonight and won't quite sleep properly.

Before I go there tomorrow, there is a conference at work for all of us over a certain grade. We have to bring an object that demonstrates how we feel about the university now, and how we want to see it in the future (the conference is titled "Future Focus"). I think some people are planning on bringing in joke dog poo for the former... I have not worked there long enough yet to be so cynical, and think the staff there are very lucky to be employed by them. I see it is more paternal - and in the future it'll be a slightly thinner father!! How do I take in that as an object? !!

This week, I had my latest Zoladex injection and BOY did it hurt! Admittedly, it is only sore for a short while, but it was certainly sore. I'm now having it every 3 months, which means the needle is bigger and leaves a hole behind. The nurse patches it with a plaster, but there is always a spot of blood leaking through... I now just have a slight bruise.

I have now made it to the end of my first box of Tamoxifen, and can say that the side effects of that are: sweatier nights (and therefore more disturbed as I am hot one minute, cold the next - bigger extremes than before), and an itchy rash that came up on my neck last weekend. It stayed for a couple of days, then calmed down, and is back today although not as itchy as it was originally. I think it is the Tamoxifen causing it - some others on the cancer forum think so. I'll keep an eye on it.

I am also very impressed by the nurse at the GP's surgery. I went in for my Zoladex and also asked for them to add the Tamoxifen on a repeat script. I had only just thought about this as I was coming to the end of the box I got from the hospital, and realised I'm not going to be seeing the oncologist again until the beginning of June! Even though they haven't had a letter from him asking them to prescribe it, she took my word for it (and I produced my copy of the original hospital script), added it to my file and gave me 6 months prescription. They get held at the pharmacy and you just pop along and collect the next box when you are ready - this makes sure there isn't any waste, should you have a bad reaction and get taken off them.

I'll be back at the doctors in two weeks time, this time to look at contraception. At risk of sharing too much, but I had obviously come off the pill a while ago to try for babies. I am now not allowed to get pregnant for a while (and certainly not while still having herceptin or radiotherapy treatment), so we need to use some precaution. It is not advised that you have any contraception that contains hormones, especially as my cancer was responsive to both oestrogen and progesterone.
o The pill - hormones = no.
o Implant - hormones = no.
o Mirena coil - hormones = no.
o Diaphragm - fiddly = no.
o Condoms - fiddly and desensitising = no.
o Copper coil/IUD - no hormones = yes.

I have to have a chat with the doctor before she'll fit it, but seeing as the usual side effects of a coil are heavy periods, and I have none at all at the moment, then it should be straightforward (I hope!). Such excitement to look forward to [emma rolls her eyes!].

Righto, I'm off now to Charlotte's to celebrate her birthday, so I'd better put my face on and wrap her present!

Will try and wrestle the laptop off Greg tomorrow and update on how the first rads sessions goes.

Tuesday, April 13, 2010

I've been nudged to update as I haven't posted in a while - sorry, been busy with work and partying and being lazy!

I have now been tattooed ready for my radiotherapy. Met with Dr Iqbal who ran through a few things about the treatment - basically just the consent form, including a laissez-faire mention of "it can cause lung damage and future cancers" . Then I was whisked through to the machine and the nurses/technicians who drew all over me, then gave me the tattoos. They are the smallest things possible, no bigger than the full stop on this page, if even that. There is one in the centre of my chest on the bra strap line, and one on each side under my arms - I can't see those! They add the ink, then there is a tiny scratch and its all done.

With the various markings on, you are then put through a CT scanner with your arms above your head, and they will use the scan results to decide where to target. I shall ask more about what they see on the scan when I go next time... are they looking for stray cancer cells?? Lymph nodes?

I asked for appointments as late in the day as possible, and called this week to find out what was happening as I hadn't heard, and it seems they have made most of the appointments for 5pm or 5.30pm, except for a couple where you have to have a review appointment. I still haven't had the letter confirming all this though. It will start on 4th May, which is a little later than I expected, but hey ho.

On other stuff, I have been very well since the last chemo until yesterday when I got a cold - but I don't have a temperature and it is the first cough/cold I have had since I started all this 5 months ago, so it is just one of those things.

We had a small post-chemo party last saturday, which happened to coincide with the Grand National, so that was our theme. I went as Red Marauder (winner 2001), Greg was Flintoff (a runner that day), Marcus was Becher's Brook, Charlotte was a race goer on Ladies Day, Penny was a jockey, Theo was a horse, Hannah and Patrick were Team Spirit (1964 winner), Katie and the other Charlotte were both Black Beauty, Luke was Royal Athlete (1995 winner) and Jamie was.... Buzz Lightyear! He's only 3, and is obsessed, bless!! It was all good fun - we have eaten nothing but leftovers since!

I started my Tamoxifen just over a week ago, and the only side effect seems to be a slight loss of appetite on occasion (although I have lost no overall weight, even though my body fat % is down...) so, just getting on with life and work until 4th May now.

If I don't report back for a while, its cos nothing has changed, I promise!! xxxx

Monday, March 29, 2010

A post (which I may or may not update as the week goes on, we shall see!), to let you know that I am fine after my last chemo on Friday.

I had herceptin at the same time as the chemo - well, just before it - half an hour to infuse the herceptin, half an hour observation (the last time they have to do that, apparently), then an hour to give the taxotere chemo. Then I was done!!! No problems getting a vein, and the cup cakes I bought the nurses seemed to go down well!!

On Friday, we went out for a meal with Luke and his girlfriend (just a quiet night out for pizza, none of us were drinking), and then on Saturday we were up with the larks to meet Greg's uncle in a cafe in Tiverton for breakfast. We got there for 8.15am, and had a lovely cooked brekkie when they finally opened at 8.30am!!

After that, straight on down to Exeter to see G's dad (Pete) - it was his 74th birthday and he is still motoring on pretty darn well!! G had bought him a telescope, which he had always wanted, so he was quite chuffed with that. After present opening, Pete had to go to his allotment as his mates wanted to celebrate his birthday with him, so I got them to drop me off in town so I could peruse the local wig shop. I'm looking for something shorter, with a fringe, to help me through re-growth... I tried a few on, but they all make me look at least 50 years old, so I decided against and bought two new lighter hats instead.

Later in the evening, we went out for a chinese meal where G's mum joined us, and then on Sunday we pootled home and stopped off at H&P's house to celebrate Jamie's 3rd birthday. It was lovely to be able to catch up with so many people!

I've felt pretty much fine throughout - a little indigestion on Saturday, and this morning (Monday) I feel a little slow and woozy, but I am not planning on doing anything much, except potter, so it should all be good.

Will update if anything happens, and will definitely post again once I've had my radiotherapy planning sesh!

Tuesday, March 23, 2010

Today was the last pre-chemo clinic and blood test I will have to do. I am so relieved, and keep crying as a result!

My bloods were super-high (9 point something, which is due to the neulasta) and Dr Iqbal said I had done really well. I've got through all 8 treatments without any delays, and only one 'scare' and I have carried on going to work throughout. I think that is pretty good. So far, I will have clocked up only about 6 days off due to feeling unwell post-chemo. I know it isn't a competition, but I am still pleased my body helped me through so well.

I now know that my radiotherapy planning will be done on 1st April and I will start taking Tamoxifen on that day too.

The radiotherapy planning is where you are measured up and tattooed prior to the actually radiotherapy starting. I forgot to ask when it would actually start (doh!) but I can ask that next week. The tattoos, as far as I am aware, are like a freckle, so they are noticeable but hopefully not obtrusive. This ensures that they zap you in the exact right place everytime and it is much quicker in and out for each appointment. The treatments were confirmed as being just 15 (every week day for 3 weeks), so that is great. I've been reading about people going through this, and many seem to feel tired towards the end or just afterwards, and/or get a slight 'sunburn' to the area being treated. Many come through it without any side effects worth mentioning and work and drive all the way through. Of course, the latter is what I am hoping for.

Tamoxifen seems to give people the same side effects that I am already getting from the Zoladex - hot flushes, dryness, periods stop, tummy weight gain - so I am hoping it won't make a lot of difference to me. As I say, I already have all of that and am coping!

The most annoying thing today was that I was all ready to go to a meeting down at Frenchay this afternoon, and because clinic was running behind and I had to collect my steroids from the pharmacy I was running late. So I called work to let them know, and found that the meeting was actually held this morning! Whoops! Not sure if I had missed an update, or if I hadn't been told! I wouldn't have been able to go this morning, so it is just as well I phoned in as I have saved myself a trip to Bristol in the rain. The only problem is, I am now supposed to be working from home and my head is simply not in the right place to do it. But then, last month (ignoring days off sick or on holiday), I managed to clock in 10 hours above and beyond what I have to do, so if today is a bit of a write-off, I don't think it matters immensely.

Dr Iqbal wanted me to have the radiotherapy planning this Thursday, but I have arranged for 'Focus Groups' with staff and students at the college, to find out what they think of the library service, so I really didn't want to have to cancel that or leave it to the rest of the team to deliver, so he reluctantly agreed that next week would be fine. I seriously had not been expecting him to give me an appointment for 2 days time, so he caught me off guard!!

Next week, I am on holiday - including this friday and this weekend, it will be a total of 12 days off work, so I am looking forward to that and am happy to fit any appointments in then! I know I will feel a bit rubbish for some of it, but I won't be thinking or worrying about work at all, and I do need a break from that. Even I can acknowledge that!

You'll also be pleased to know that I am feeling much brighter than I was the other day. Diet changes are already having an impact, I am certain. Although I am struggling to get off to sleep, but that is mainly because I am anticipating Friday's chemo - this seems to happen quite often during the week before chemo.

Oh, and my hair is probably a couple of centimetres long now! It sounds a lot, but it is still far too thin (especially on the very top and front) to be on display out and about, but it is nice and soft and after this chemo, will hopefully come back in earnest. Just in time for summer sunshine, we hope!!!

Sunday, March 21, 2010

One of the ladies on the breast cancer forum I chat on, one who had created a kerfuffle when she posted that her Mastectomy was a 'doddle', has died. She was my age, had a different (more aggressive) breast cancer than me, had the same chemo regime as me, but with mastectomy after the chemo (this is quite common), and shortly after her operation found she had secondary cancers, specifically, in her brain. (FYI: secondaries are breast cancer cells that have spread - it is possible to get another primary cancer which would be entirely unrelated to your original breast cancer)

She got pneumonia and was hospitalized on Wednesday. On Friday, she died. Just two months after her secondary cancer diagnosis.

I am also struggling a little bit today as I feel very tired and my eyes are playing up. They feel sore, so I have probably got a tiny bit of face cream in them, which means they are streaming and that in turn makes my eyelids feel sore and puffy, so I generally feel a bit crap. I had been feeling tired on Thursday and had a slightly raised temperature, but this seemed to get better. Then on Friday, I didn't help by going out and having lots of beers with Luke & Greg. We had a laugh, but I have been paying the price of a hangover since then!

I also think that our new diet (which we have only been following for a week) is not helping. The idea was that we would have a bigger lunch and a smaller evening meal. I knew I would struggle to have a bigger lunch as I have no time or inclination to eat a big meal in the day when I am at work. So I had my usual kinds of lunches - soup, sandwich, those Innocent Veg Pots, fruit, yoghurt. And then evening meals this week were things like beans on toast, scrambled egg, tuna sandwich. In essence, I just don't feel like I have been eating properly at all and as a result, my energy levels are struggling.

So I am starting again today and have had fruit, yoghurt and peppermint tea for breakfast, and will have a salad for lunch. I've made a list of meals from my 'Superfoods' book and hope to have the energy to prepare them. Greg and I both suffer from low energy after a day at work, so neither of us wants to cook. We are lazy sods really.

I just feel so different to how I felt at the beginning of this week. I started a beginner running programme last Sunday (run 1 minute, walk 90 seconds, x 8) and tried to do it this morning, but only managed half at a very slow speed. Here's hoping my energy comes back when I start eating properly again. And no more drink!

Wednesday, March 17, 2010

I've been back down to The Heath in Cardiff today to see the Medical Genetics team to discuss testing to see whether I have either of the two gene abnormalities that have so far been identified as increasing the risk of breast (and ovarian) cancer. These are called BRCA1 and BRCA2 (literally BReast CAncer 1 and 2).

We went through my family history and agreed that me, mum and gran all having breast cancer does put me into the 'high risk' category. There are 3 categories: - High, means that you will be offered annual screening between the ages of 35-50, reducing to every 18 months after that. - Moderate risk, means screening starts at 40, and - Normal means you join the usual national screening programme at 50.

The counsellor explained basic genetics to me. We each carry pairs of genes and inherit one from each parent. So if my mum (for instance) had one 'good' BRCA gene and one 'abnormal' one, I have a 50% chance of inheriting the bad one. So does my brother. I'd inherit the other one of my pair from my dad, but as there is not any massive history of any cancers on that side of the family, the likelihood it has come down that path is too low to worry about.

So I have agreed to be tested, as I would like to know in order to help me make decisions - in particular, whether to have a 'prophylactic' (or elective, risk-reducing, preventative) mastectomy on my healthy boob when I go for reconstruction.

Being identified as having one of these genes means that your lifetime risk of getting breast cancer is 50-80%, and of getting ovarian cancer, 10-40%. This is versus the 'normal' risk in the population of getting breast cancer of 10-11% and ovarian cancer of 1-2%. So it is a significant increase, but still not an absolute.

Having a mastectomy (or having your ovaries removed, called an oopherectomy) significantly reduces the likelihood of developing it in the future, but does not elimiate the risk entirely.

If we find I don't have the gene, it is highly unlikely that my brother carries it either. It is much more likely that me, the one wot has had breast cancer, would be a carrier than someone who hasn't had any cancers. However, if I do have a gene, he could also have it and will need to keep a closer eye for prostate cancer, and his daughters, my neices, will fall into the 'moderate risk' category and could be eligible for additional screening. But lets not worry about that too much as they are young, breast cancer is an adult on-set disease, and science will have improved a lot by the time they are at potential risk.

The other thing that has crossed my mind, when thinking about this in the past, is that if I did have the gene, would it make me reconsider becoming a mum. Maybe. I would have to really think about it. But I suspect I would go ahead as, as the counsellor pointed out, science will be a long way ahead by the time they are 'at risk'.

So, I am going to have blood taken as part of my routine appointment next Tuesday so I have a form to ask them to take more for the genetic testing at the same time. It takes 3-6 months for the testing to be completed (it is a little more complex than a routine test!) and when the results are in, I'll be invited back to discuss them. Keep everything crossed that me, mum and gran have just been 'unlucky' and that this thing doesn't having ongoing repercussions for the whole family...

Friday, March 12, 2010

OK, we're feeling inspired today. If you haven't seen the "Marathon Man" programmes about Eddie Izzard running 43 marathons (that's 1166 miles) in 51 days then you truly, truly should.

I was in tears last night watching it. It really struck a chord with me. You know I am reasonably no-nonsense, and you will have seen from my blog the other week about the frustration of being unfit that I am impatient, but seeing Eddie so dedicated to his effort, so cheerful as he continues through it, through pain and fatigue, is just awe inspiring. I love it when locals join him on his journey to encourage him on, whether they were the unemployed boys or aimless kids from Merseyside or the mountain rescue team in the Lakes, or just the girl on holiday in Wales whose dad "told her to catch Eddie up". He touched so many people on his journey, and I feel honoured to be able to share it on TV.

It left me crying for a lot more last night - hard to explain, but I was having another good sob. And also getting angry, again directed at people who bemoan (what I consider) small problems. Even while feeling angry and intolerant, I still had that nagging voice reminding me that everything is relative, everyone deals with things differently, but can I admit to frustration with work colleagues who are filling silence with daft speculation? (I have no problem with reasonable speculation, but get real!). With others who cannot see that change is inevitable and have the confidence to roll with it? I'm not just talking about my immediate team - who on the whole I have the utmost respect for and love to bits - but other people I work with too. I was very tearful still this morning, but getting a good few things done at work has helped, and I am back to being a little more understanding again.

What I AM left with, it still the feeling that the healthy do not try hard enough. That you are capable of so much more than you realise. I posted a Facebook status in my frustration last night: "Em has got really emotional watching Eddie Izzard's marathons. Don't give me excuses, get off your arse and get on with stuff. Seriously."

And bless you Charlotte, you have risen to the challenge (wine fuelled or not, you are committed now!!!) to Walk the Walk with Greg and I. It is a half marathon walk, no running allowed, on 4th July. You have to wear your decorated bra with pride. Men and women are allowed to take part, and you need to raise £100 each in fundraising.

I haven't started the fundraising yet (I'll give you all a break from having given so generously when I was diagnosed and started all this crap!!), but nearer the time, "Team Flora" (don't ask, it's a long story!!) will be coming!!!

Or why not join us, on what will hopefully be a sunny day in July? I've promised Charlotte alcohol afterwards, so let's party!!!

Monday, March 8, 2010

OK, it is monday morning, 11am already. I slept reasonably (took the first of my ration of 5 sleeping tablets last night), and woke on and off with the various radios and alarms going off around me. Normally, I am straight up and awake or even awake before alarms go off, but today they were buzzing all around me and I was barely aware. This is what Greg is usually like, not me!!

I dozed while he got ready for work and left, and eventually got up to get headache tablets and breakfast around 9am, after calling in to work to confirm I won't be going in today. A little catch up on 4OD for more episodes of Glee, and now I am about ready to get up properly.

I am still feeling very slow, and have a hunch I will get frustrated today. In my head, there are 101 things I want to do, but I don't think I will have the speed to do them all. I must try and prioritise and pace myself.

First, tidy the house. I can't do anything until the house is cleaner.Then.... see if I feel up to going to the garden centre to sort out Mother's Day presents (you know what you're getting, mum!!!! ).I'd also like to tidy out some clothes drawers that are overstuffed with things I can't wear, sort out my photos on the computer, and delete some emails from my work email account before it stops me sending any more (very, very imminent!).

I also want to plan some meals as I have spent the past 2 days eating odd things and G and I have agreed to start having bigger lunches and smaller evening meals from this week onwards. He wants stuff like poached egg on toast for dinner. I am not good with a big lunch - I don't have time for it when I am at work, and I just end up snacking lots more in the evening, so I suspect we are going to be eating very different meals on this 'regime'. Hmmm. We'll see how it goes.

I am still going hot and cold. My heart is thumping and I feel short of breath, so I need to take it all slowly. I promise I will. xxx

Thursday, March 4, 2010

Yesterday's herceptin was easy peasy. 1 hour being infused, half an hour being observed. I napped, read, the time went quickly. Greg went for a drive - too far, he ended up having no time at his destination before I was telling him to come and get me. I needed him there just in case I had a reaction, but no problems. We went for a Mexican meal afterwards (and some wine, oops!).

It's been a long day at work today - arrived at 8am as I had 'World Book Day' events to present, and got everything done by 6.15pm. Some things have had to be delegated, but I know I have patches where I don't do enough of that, so it's not a bad thing.

I'm very proud of my team for the way they are coping with me, with the uncertainties at work, with the crazy ideas that I have and get them to work on. They are simply fabulous. After the online newsletter and World Book Day, we now have had a 47" plasma screen delivered (yes, I ordered) so now we need to get it installed and hooked up to show advertising on a powerpoint display. Should be interesting! Oh, and a SoundEar. We are very excited about this - it should keep the noisy students less noisy...

I took my 2nd dose of steroids a little late today, so am currently still quite awake, but thats OK. I have some chores to do tomorrow morning before I go to the hospital, and then Waitrose as Sophie Student is coming over for lunch. Her tutors have recommended a home visit, so she'll get to meet the cats that I'm always talking about!

Talking of whom, Hobbes is now on as many drugs as me, I reckon! Took him to the vet a month ago as he's had a recurrence of cystitis (he has it this time last year too), and the initial drugs haven't cleared it up so he's had a bucket load more. He is now getting tuna twice a day to hide the drugs in!! He's quite liking that bit!!

He's had a couple of jabs (anti-B's and anti-inflammatories) and is now on Cystease capsules (emptied onto food) and Metacam (more anti-inflam). Can't say it is working yet, he is still peeing in the shower and spraying the house in random places. Sigh.

Right, must remember to try and get tickets for V festival tomorrow - Faithless, Kasabian and Pet Shop Boys are all on the bill, so it would be great if we can go. More stuff ticked off our list.

We saw Rhod Gilbert a couple of weeks ago, and it was brilliant. Greg was right to suggest we saw him in a Welsh town, it was totally random! Click on the link to see one of his classic gags.

Tuesday, March 2, 2010

Hurrah, had bloods done today - more delays at the clinic, but I had a word with the nurses and told them I had to leave by 2pm as I needed to get back to work, and I think they bumped me up the list as I was seen only 30 minutes after my appointment time despite everyone having been told there was a 90 minute delay.

The oncologist had had to go to a meeting, so there was a specialist nurse in his place - at this stage, that was fine, as she actually listened and made notes about what I was saying. She couldn't prescribe, but made notes of what drugs I asked for (essentially, just sleeping tablets and mouthwash) and confirmed that radiotherapy should only be for 3 weeks. She said she would find out when it will start and get someone to call me or send me an appointment through. Apparently, they will do radiotherapy appointments from 7am to 7pm, so if I can get an evening slot, that would be great. I can continue going to work.

I've been reading comments about radiotherapy and quite a few people say they feel more tired after it has finished as it has a delayed effect. Well, I have time off booked towards the end of it, so it may be that I spend it sleeping!!!

2nd Herceptin tomorrow. I did have an appointment booked to have a PICC line inserted, but when they called last week to confirm it, I had another chat with the nurse about whether I needed one yet and decided to cancel. So, it'll be cannulas into the hand for the forseeable future.

Oh, and apparently the reason I was a bit of a witch to Greg after the last lot was down to the steroids, not hormones. The nurse seemed very sure of this. No doubt, he is really looking forward to that again next week!!! ha ha ha

Monday, March 1, 2010

My mood has been brighter this past week, but I haven't posted as I have been too busy!! Last week was full of 9 and 10 hour working days (OK, so I'm sure plenty of people do more, but that is a fair few for me), visits to Charlotte's and winning at ten pin bowling.

We have lots going on at work, not only the transfer from Uni to College, but we've also just started a book stock review (yes, my idea, so the workload is my fault), been helping the team get the second issue of our newsletter blog ready (you can take a sneaky peak here) and preparing for World Book Day this thursday. I have cobbled together an agenda of seminars - not sure if anyone will turn up, but it is worth a go. I put together the slides for a talk on 'Copyright for Teaching Staff' today so have spent the afternoon reading copyright licenses! I have so much fun....!!!

This is 'appointment week' again, so off to the hospital tomorrow for bloods. I am hopeful that things won't be quite as chaotic as last time, and I have to be out of there by 2pm at the very latest as I have a library teaching session to do at 3.30pm, back at the College. The Veterinary Nurse teaching staff want a refresher on how to search for full text journals and get hold of published materials. I really want to find out about the radiotherapy this time - I definitely need to know a start date and I'd like to get an idea of whether I will be likely to drive myself there or not, at least initially.

I warned my local friends that I may be asking for lifts during that time, but obviously they can only do so much as they have jobs and children and lives of their own, but I know they won't mind helping out if they can.

Wednesday is 2nd dose of herceptin, and Friday is the 7th chemo session. So, so nearly there. I am bored of it now, I just want to get the last one done and dusted so that I can get better and better instead of being knocked back every 3 weeks. I just start to feel great when they dose me up again and I feel crap for another week.

The good news is, the evenings are getting lighter and spring is nearly here. Yay!

Wednesday, February 17, 2010

Have been feeling fine today, maybe not 100% speed, but much much better and feeling pleased with myself for being back up again so soon after a chemo.

Decided to get on my treadmill for a short while, just to try and keep my fitness up to a certain level and was intending only to walk, perhaps with an incline, for 30 minutes or so. But of course, I have to try running. It was the slowest of slow runs (4-5 mph) and only for a few minutes at a time, as my feet did feel a bit odd, so I was trying not to overdo it. But I did. I managed 1 mile in 14mins 30 seconds, which included lots of walking, but I did push it a little further than I ought to and when I stopped I did feel a bit dizzy. Overall, I did 25 minutes, so the other 10 minutes was just walking.

So far, so good, I stopped and rested and was off to the kitchen to get myself some water, when I knocked over a glass as I moved past G (who was playing XBox in the same room as me). It smashed everywhere, and I was feeling way too wobbly still to clear it up, so he did it for me. Meanwhile, I burst into tears and had a good sob. Why?

Frustration that I am not fitter.Annoyed that I broke a glass (a minor thing in the scheme of things).Anger that this treatment and illness has made me like this.But mostly huge anger that so many people take their fitness for granted - take their ability to get fit "if they choose" for granted.

Getting fit is hard work and you have to make yourself do it. And I know, even in my current state, that I could be fitter and slimmer than I am if I really, really tried. But I am being held back at the moment, and it is partly an excuse but also HUGELY a frustration.

I know I need to slow down sometimes, not push myself over my own limits. I also know I need to keep testing thoseS boundaries. Sometimes the test of the boundaries goes too far... but you don't know until you try.

G gets frustrated because I insist on going to work - we nearly had words on Monday night when I told him I was going in on Tuesday, but I did know, and was right, that going to work on Tuesday was the right thing to do. I took it slow, but it made me feel better. It made me feel needed and useful again.

I was wrong to push into a run on the treadmill tonight, it took my few energy reserves too far. But I am right to keep pushing a little bit. It gives me some self respect and reminds me I am alive and will continue to be so for some time to come.

Saturday, February 13, 2010

And it is Saturday, so we start the countdown to see what the symptoms will be like this time.

Yesterday's treatment went well, in, hooked up through the vein the back of my hand (am now wondering if I have been a little too quick to get a PICC line inserted before I need to... did I say it is booked for 3rd March?). An hour and a half of saline/taxotere/saline and then home.... via picking up G's dad so he can help out with sorting out his house and taking out the kitchen.

So that is what we did today - they took the kitchen out, and I went shopping!! Greg needs new shoes so he can go to his Aunty's funeral in Exeter on Monday both to show his face to family he doesn't see very often, and to support his dad (who, to be honest, doesn't sound like he likes his remaining brothers and sisters very much, with the exception of one pair!). I am not planning on going, as I felt really lethargic last time by the monday, so I don't think I would be up to it.

I had an idea today - I have been on a high steroid dose since Thursday, which aim to prevent an allergic reaction to the taxotere and put you on a bit of a high. That prescription is complete now, so none planned for tomorrow. However, I have a few left over from a previous prescription, so maybe I could wean myself off them over the next two days and my expected 'crash' tomorrow won't be so hard? So I phoned Velindre to speak to the chemo nurse, who checked with the doctor, and they wouldn't advise it. Bum. I thought it was a brilliant idea... but I shan't go against their advice. I have a meeting on Tuesday afternoon, so I am really hoping I will be well enough by then to drive to Bristol and back, even if I take the morning off and take it slowly.

I forgot to take my Neulasta injection on time today - it has to be at least 24 hours after the chemo, but in fact was about 31 hours afterwards, but it is done now. G nagged me!!! I had meant to take it to G's house and do it there, but forgot. I will now expect a few slight aches from that, but at least it is boosting my white cell count each time!

Only two more chemos to go!!! The count down is SERIOUSLY on!!!!

Sunday - Was on a steroid high this morning, so cleaned the house. G and his dad toodled off to Exeter via Gloucester, so I have chilled out this afternoon and watched the entire series of Glee online. I kinda see why people like it. I loved the dancing at the football game. But essentially, it is just nice to have a TV series that is happy and light, and not doom and gloom. But it is a bit candyfloss. Will I carry on watching the rest? Probably, but not when Greg is looking.... ;-)

About 8.30pm and I have started to feel rough again, just a slight headache and fuzzy mouth starting, plus extra farts and hot and cold again. I have a blanket, on, off, on, off, on, off.... Didn't sleep brilliantly, so I have now taken some Hedex and a sleeping tablet, and hope that that (plus having the bed to myself) will mean I get a good night. I am not expecting or planning to go to work tomorrow. But maybe Tuesday I will.

Tuesday - had yesterday off work and pottered about. Today, I went into work. Very slowly, teetered into the office, caught up with some emails and went to a meeting about "Libraries of the Future". I didn't stay late as I didn't want to get stuck in Bristol traffic, but I did also do the weekly shop (slowly) and went home and cooked G some savoury pancakes... which he didn't like! Well, he was polite about it as I complain that he seems to hate everything I cook. To be honest, I have been in a grump as I feel like I still do everything around the house except the cooking. And I told him so. He is blaming my up and down hormones, I am just blaming tiredness and still having to do everything.... sigh. I am fairly impossible to please, as I want to be as independent as possible, but something simple like clearing up last night's take away would have kept me calm....